I wake up with searing nerve pain down the side of my lower back down to my foot. I struggle to sit up and limp when I walk. The pain is so bad it feels like shards of broken glass under my skin in my lower back.
I now live between two worlds, before and after endometriosis.
It’s the disease that doctors love to tell you isn’t life threatening; but takes away your ability to function normally and has changed the canvas of my life.
Period pain is something that all teenage girls and women expect to have. But for me, I would have stabbing pains in my abdomen for the first two days of my period that literally took my breath away.
The pain was so severe that I would stop and catch my breath and look for something to hang onto until the pain passed.
Josephine Miller. Source: Getty Images
I accepted this as normal. I started doing up to 100 sit ups a day as the stretching seemed to ease some of the pain.
Being pregnant with my two young kids was a blessing for me. My periods afterwards were virtually pain free. I wouldn’t even realise it was that time of the month until I started bleeding.
It was not until the age of 32 that I started having stabbing abdominal pain again.
One night I woke up in agony. It felt like my abdomen was going to explode.
The pain would build into a searing agony from my belly button down. I couldn’t stand or get out of bed. I was gasping in pain and unable to move. I would lay there in agony, panting and praying to pass out so I could escape the pain. This was when I started sleeping with painkillers beside my bed.
I went to the doctor and he ordered an ultrasound. They could see that one of my ovaries was stuck to the pelvic wall, so I was sent to the gynaecologist.
I wondered if I had endometriosis as my mother had been diagnosed with it. The gynaecologist didn’t seem overly concerned about endometriosis. I was told that I needed a totally hysterectomy with an oophorectomy to remove my ovaries. I was 33 years old. Wasn’t I too young to go into menopause? What effect would this have on me? I asked. I was told it was fine. They said, we just put you on hormone replacement therapy (HRT).
I was told that I needed a totally hysterectomy with an oophorectomy to remove my ovaries. I was 33 years old
I went away devastated. I started researching the effect of menopause and discovered it affects your entire body.
I sought a second opinion and was basically told that the original specialist would know best. I went to a women’s health unit and was told that it wasn’t unheard of to be given the advice of a total hysterectomy as a first option.
I decided on a subtotal hysterectomy which meant I could keep my ovaries, as I was not comfortable with going on HRT.
Now I was in so much pain I could barely walk. It was like all the nerve endings inside had been upset and now it was agony. It felt like my insides were on fire from my belly button down. I remember the nurse telling me to breathe slowly as I was gasping unable to speak, the pain was so bad. I next remember seeing my surgeon standing at the end of the bed and saying that my insides were like raw oozing meat and there was extensive scarring in the entire pelvic cavity. He said he had managed to save my ovaries that had been stuck down to the pelvic wall. I was grateful.
It took about 12 months to heal. But slowly the pain started again. There was an ache deep inside and then flare ups every couple of weeks with the stabbing pains like before. I felt bloated and nauseous nearly every day.
It was like perpetual morning sickness. I was so tired with the lack of sleep from rolling from side to side all night long with lower back pain and nerve pain running down my legs. I was also tripping when walking.
I went back to my original specialist as I also had some spotting, even without a uterus. I asked if we should have a look in my abdomen again as I was in pain, even if it hadn’t reached the heights of before. I was told that he didn’t want to go near my belly as it was such a mess in there
I was told that he didn’t want to go near my belly as it was such a mess in there.
I felt totally dismissed and felt like maybe I was just supposed to live with this pain and harden up. I went home and tried to do yoga, stretches, gentle walking, and focused on a good diet in the hope that I could improve my pain. After a couple of months, I went back to my GP and suggested we have another ultrasound as I was still in pain.
They could see from the ultrasound that both of my ovaries were now stuck to the pelvic wall with cysts on them. I was very upset when my GP told me the results.
I started seeing a great endometriosis specialist in Brisbane. He unstuck my ovaries from the pelvic wall, removed the cysts, removed my fallopian tubes as they were packed with cysts, but he was unable to remove the endometriosis from my bowel. It had grown all the way through the bowel wall, and I had a partial bowel obstruction. I could feel a difference after this surgery and I took heart from this.
When I lay in bed it no longer felt like snakes writhing under my skin.
I could still feel the deep ache in my back, but my abdomen felt quiet and calm. I went home and prepared for the bowel resection. I was afraid but I had faith in my doctor.
The nurses laughed when they saw I had a bowel resection for my birthday. I said I hoped that my doctors made me better and that would be the best gift.
Afterwards I still had a sore back with nerve pain down my legs and was still tripping when I walked. I started acupuncture. Six months after the surgery, I gradually improved. I felt better.
You cannot describe to other people how much that means and the difference it makes in your life. Unfortunately, feeling better only lasted 12 months. I walked, I tried massage, acupuncture, yoga, swimming, desperately hoping that it was only scarring and not a return of endometriosis. Unfortunately I needed more surgery.
I hoped the removal of my cervix might finally end the disease. It was another big operation as my bladder was pinned to the cervix and the scar from my bowel resection.
Fingers crossed; I now no longer need any more endometriosis surgeries as I am moving into menopause. The night sweats, hot flushes, brain fog and nausea are difficult, but I am so grateful that I am not having surgeries and for now at least, I seem to have lost the writhing snakes in my belly.
The damage done by endometriosis cannot be repaired. I have had constant broken sleep for seven years. I hurt when I stand, sit, walk, or sleep. I still trip when I walk and have nerve damage from both the disease and the surgeries needed to treat it.
I am left with a devastating trail of destruction that has affected every area of my life. I am limited with how much I can work, exercise and function. More than two hours of any activity leaves me exhausted for up to two days. I still carry a zip lock bag with painkillers because I never know when pain may hit me.
Josephine Miller is a writer from Queensland, who enjoyed reading as a child and discovering new adventures and horizons by turning the pages of a good book. She hoped someday other people would discover that same pleasure by reading her stories. This is her first published work.
This article is an edited extract of an entry chosen from the 2021 SBS Emerging Writers' Competition.
Endometriosis Awareness week runs from March 3 to 9.
